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Topic: An on-going thread (Read 167774 times)

However get me a ton off hash , diazepam, a little champagne and I will diligently work my Way through it , it,s my one thing that I am addicted all things leaf , therefore i buy small amounts and have big gaps between them.

Michael, I discovered I didn't even drink that much. Both bottles of zin are still corked. I only had a couple of drinks (vodka and cranberry) at work and then a couple of beers while sitting on the porch.

Smoking does me in quicker than anything. I really don't even enjoy it that much. I imagine a lot of us LTS have used it as script in the past? When I was deadly sick with the meningitis, my brother brought me some and insisted I use it. At that point, I couldn't even hold water down, let alone think of eating. It did allow me quite a bit of comfort and improved my appetite.

Went to the bone doc's office today for follow up on this "healthy bones" thing his office has. The nurse practitioner does it. Anyway had a bone scan a couple weeks ago. Showed severe osteoporosis, and I will most likely be starting Forteo in the next month. Hopefully this will help.

When I was in the office today, my blood pressure was 80/52. No wonder I have waves of dizziness.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I've been planning to ask my doc to schedule a full body DEXA scan in my appointment next month. My current insurance only covers it for 50+, but I think nearly 20 years of HIV and a metric ton of Truvada should get me a waiver.

My vitamin D levels are good through supplementation, and surprisingly my testosterone is better than it was in 2008 or 2009 when I had a testosterone Rx for several years, maybe the zinc is helping, so I'm hoping things aren't too bad...

My vitamin D levels are in a good range, also. And the bone loss seems to be worse in my back than in my right hip (strangely, even though I broke my left hip in Feb).

I guess this is not surprising. I've had bone issues in my back, starting with scoliosis, since 1st grade. Besides the Forteo, weight bearing exercises were of course also recommended.

In talking with the people at the specialty pharmacy the Forteo is mixed up at, I was told this med could be used no longer than 2 years. But it's the only one that actually builds up the bones. I feel like I was given so much info yesterday, especially one about the para-thyroid I'm going to have to re-read, that my head was spinning by the end of the day.

It seems my para-thyroid is abnormal. I was told this was much different than the thyroid that I take Synthroid for. I have to have an appointment with an ENT doctor for a scan, to make sure there are no tumors, prior to starting the Forteo.

Wish me luck with this. I should be getting a call today with an appointment for the ENT. I'm surprised my head is clear enough to post this, since it is only 2:35 am here, and I"m up for the day (thanks, insomnia).

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Best of luck Betty . When you found out a while back that your hip was not healing properly I think you suspected your bone health was worse than you had initially thought if I'm remembering correctly . I still have to giggle every time you say you are going to the healthy bone clinic ... Don't know why but that cracks me up .

I imagine you're not too surprised Betty. This will be a new wave of issues us oldsters have to deal with. I've said it enough times that I hope it starts clicking with people. My dear doctor indicates that he's seeing a large % of patients who are dealing with this issues regardless of the regimen they're taking.

I'm confused about the med you're on. It's the only one that helps build bone mass? Then I'm going to ask my doc why the hell I'm on Boniva. Also, my vit B and calcium levels are fine but I still developed the ole osteo issues.

Well, other than the bone issues, I'm okay. I do have these white bumps on the inside of my mouth, most near the corners of my mouth, which are cracked. These have not responded to either Diflucan or Nystatin swish and swallow so my doctor wants me to make an appointment. The inside of my cheeks feel like they're on fire. Don't know what's going on with that.

Have not heard yet on an appointment for the para-thyroid. But I'm sure that will happen next week (hearing about the appointment, not the actual appointment). I was not surprised to hear about the severe osteo. I know we long term'ers are facing this more and more.

Mitch, I have no idea what's going on with the low BP. When I got out of surgery for the hip, it was like 52/30. They kept giving me more IV fluids in hopes of bringing it up, and then it only came up to like 80/40. I'm on 1/2 a Lopressor every day, but for heart issues, not BP. Don't know if that is causing such a low dip or not but if I remember I will discuss with the doctor when I have my appointment.

That's it. Sorry for such a long post. If I can get these white bumps gone, the burning stopped, and my bone mass built back up, I will be a happy camper. Oh and Michael, yes, the Forteo is a brand new med.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Mark I am sorry and angered at the cruel situation you find yourself in and it is horrible irony that it comes after your own work to secure a degree off care for your clients.

It seems just intolerable that any Health company can close without any effort to cover there client group, still my disbelief is not going to help you get back your enjoyment in breathing , which I see as top priority for all of us.

Keep on Posting to us Mark , if only to argh!!! and vent , I hope that a workable solution is discovered , wish I had some knowledge off the US system , other than it seems hugely complicated and differs from state to state.

Take great care off yourself Mark , lots of loveMichael

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Mark ... I am so sorry you are going through this ... its brutal and unfair . Getting healthcare and providing for myself has been a lifetime struggle for me so I feel for you and understand what this means and what you are up against . There is not much I can say that can change your circumstance but please know you are in my thoughts .

I just had lunch with Alanbama and Layne ... We discussed all of our LTS stuff like where does it hurt ... all over is the same answer to the same old story .

If we were not able to laugh about it a little it would be truly sad . I see allot of us struggling with the same issues, we have to go see specialist to find out if the fatigue and pain are caused by something new or is it a nasty cancer that's making life miserable .

We can appreciate the fact that we are grateful just to be alive and cope with the fact we have been damaged and try to keep laughing and smiling when we find our new normal and quality of life has been chipped away at the edges again .

We had a very good visit and its great to be around my fellow LTS friends who are able to talk about these things and not feel burdened by it all because even though we are damaged we know damn well we are the lucky ones who are still here and still kicking .

Not trying to be vague or talk in riddles but I just bet some of you know exactly what I am saying .

I just had lunch with Alanbama and Layne ... We discussed all of our LTS stuff like where does it hurt ... all over is the same answer to the same old story .

If we were not able to laugh about it a little it would be truly sad . I see allot of us struggling with the same issues, we have to go see specialist to find out if the fatigue and pain are caused by something new or is it a nasty cancer that's making life miserable .

We can appreciate the fact that we are grateful just to be alive and cope with the fact we have been damaged and try to keep laughing and smiling when we find our new normal and quality of life has been chipped away at the edges again .

We had a very good visit and its great to be around my fellow LTS friends who are able to talk about these things and not feel burdened by it all because even though we are damaged we know damn well we are the lucky ones who are still here and still kicking .

Not trying to be vague or talk in riddles but I just bet some of you know exactly what I am saying .

That's a most excellent sentiment Jeff. I imagine a lot of LTS laugh about a lot of what we deal with as it certainly beats the alternatives. In a selfish way, it's comforting to know others suffer the same ailments as it indicates it's not a unique individualized problem.

I try to put it into perspective whenever I start to bitch and complain. All I have to do is remember the beautiful faces of all those I lost at such a young age.

I do get to mention a new issue I had last night. After several hours of working, my feet started aching badly. I kept working and then it started to feel like fire ants were biting me all over my feet. It's lessened a bit today but a little burning sensation remains. I might just take it easy for a while and see if it's something I can dismiss as an anomaly.

That's a most excellent sentiment Jeff. I imagine a lot of LTS laugh about a lot of what we deal with as it certainly beats the alternatives. In a selfish way, it's comforting to know others suffer the same ailments as it indicates it's not a unique individualized problem.

I try to put it into perspective whenever I start to bitch and complain. All I have to do is remember the beautiful faces of all those I lost at such a young age.

I do get to mention a new issue I had last night. After several hours of working, my feet started aching badly. I kept working and then it started to feel like fire ants were biting me all over my feet. It's lessened a bit today but a little burning sensation remains. I might just take it easy for a while and see if it's something I can dismiss as an anomaly.

One thing we talked about was how we can't afford to assume new symptoms are from old injury's and we have to get it checked out ... but I see it all too often how nerve damage and pain with fatigue are a common LTS experience .

I tell you what I really feel bad about and that is what Mark posted today ... that really hits me in a very personal way when I hear about him spending his whole adult life getting people the care they need and end up being pushed out of treatment options simply for working... and its a sad irony that he is going to have to do without meds that he makes sure others can get ... its just so fucked up and makes me spitting mad .

The same old crap that happened to Betty when she made a few measly $$$ than the limit and lived for over a year waiting to find out if she was going to have healthcare and income the next month . end rant .

We all have to keep humor in mind it seems. Mitch, don't be concerned about my blood pressure. My mouth seems stable at the moment.

I also am very pissed off about Mark's issue. I would only hope someone there would step up and try to help him as he's helped so many others. Like Theyer said, where is the reporting? These stories need to get out.

Since starting the women's support group, one of the ladies I have become close with is a LTS'er, and is blind from CMV. However, she lives by herself, is independent, even wears beautiful outfits. I asked her how she puts her clothes together, if someone comes over to help her. She said no, she tells by the feel. I have no idea how she does it. Blindness has always been a fear of mine, I can't imagine living alone being blind, not being able to see what's going on.

I guess we never know what we can deal with until it's dealt to us. I always think "I can't take on anything else," until something else happens, and I think "well, what other choice do I have besides to deal with it." It gets so tiring, but as you all have said, it beats the alternative.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Last Thursday I'd been to "The Quarterly" a 4 times a year get together for Poz folks in Sydney.

I was walking back to the train station afterwards with another LTS. There was a guy approaching from the opposite direction and at about 2 meters / 6 feet distance I notice a reflection off metal. I pushed my friend Paul to the side as the stranger swung at him and the meat cleaver (as we later discovered it was) missed Paul by about 15 cm/ 6 inches.

I called the cops, they caught their man trying to hold up a liquor store a few minutes later. No one hurt so it's all good.

Mark, so sorry I missed your post....that is absolutely freaking awful. I certainly hope they make some sort of concession for you. How horrible to have to deal with this after all you've done to assist others.

This is another prime example of why it's difficult to chose to work instead of relying solely on SSDI. Made that mistake in the past and it scares the heck out of me at the thought of ever loosing access to medication.

Last Thursday I'd been to "The Quarterly" a 4 times a year get together for Poz folks in Sydney.

I was walking back to the train station afterwards with another LTS. There was a guy approaching from the opposite direction and at about 2 meters / 6 feet distance I notice a reflection off metal. I pushed my friend Paul to the side as the stranger swung at him and the meat cleaver (as we later discovered it was) missed Paul by about 15 cm/ 6 inches.

I called the cops, they caught their man trying to hold up a liquor store a few minutes later. No one hurt so it's all good.

Sometimes it's good to walk with a friend!

That is horrifying . I was thinking how awful the be assaulted with a cleaver or knife ... Here in America that probably would not happen, you and your friend would have been shot and killed most likely . There is no rational way to compare the two but the thought of getting knifed is really frighting to me . I got stuck with something in Chicago when I was mugged but it was a pin knife and didn't even bleed that much . The police said I was lucky because if the guys had a gun it would have been the end of me ... I'm happy you were able to dodge the assault and I'm afraid you would not have been so lucky here ... very sad .

Last Thursday I'd been to "The Quarterly" a 4 times a year get together for Poz folks in Sydney.

I was walking back to the train station afterwards with another LTS. There was a guy approaching from the opposite direction and at about 2 meters / 6 feet distance I notice a reflection off metal. I pushed my friend Paul to the side as the stranger swung at him and the meat cleaver (as we later discovered it was) missed Paul by about 15 cm/ 6 inches.

I called the cops, they caught their man trying to hold up a liquor store a few minutes later. No one hurt so it's all good.

Sometimes it's good to walk with a friend!

My God, that's horrible. So glad the idiot missed you all. That would most likely keep me inside for a couple weeks.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Last Thursday I'd been to "The Quarterly" a 4 times a year get together for Poz folks in Sydney.

I was walking back to the train station afterwards with another LTS. There was a guy approaching from the opposite direction and at about 2 meters / 6 feet distance I notice a reflection off metal. I pushed my friend Paul to the side as the stranger swung at him and the meat cleaver (as we later discovered it was) missed Paul by about 15 cm/ 6 inches.

I called the cops, they caught their man trying to hold up a liquor store a few minutes later. No one hurt so it's all good.

Sometimes it's good to walk with a friend!

Yikes!! Glad you had the wits to see it coming! I think I would have just fainted.

Mark, I am appalled that this is happening to you. As we've discussed, every year that passes our healthcare situation seems to get WORSE. Like Jeff, I am very P.O.'d that you are having to face this. It is so WRONG, on so many levels.

Meanwhile, I have been reading my POZ magazine 20th anniversary issue. Seems that everyone is a "somebody", in the world of HIV/AIDS. Well, here's a message from a "nobody" - we've gone through it the same as every one of you, without our photos in magazines and articles written about our "amazing survival". We go about our business, the business of surviving, day in and day out, with little help and no recognition or accolades about our "grand accomplishments". Sorry if I sound a little bitter, but I think I'm entitled to it.

I'm missing the voice of Daddy Tim here, and Lisa, and Ric, and RAB -- and all those we have lost along the way.

Jeff, it was so good spending time with you. We both love you, my friend. Mark, all I can say is I am thinking of you, and wishing you nothing but the best, always. Know that you are much loved and respected.

Keep the faith, keep fighting back. We may go down, but let's go down swinging.

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

I would be shocked if they didn't figure out a way to make you qualify Mark. In the mean time, I can spare some of my back-up supply. We're on the same meds and I have plenty if you need something to hold you over until the process is completed.

I also really need to focus on logging out of the dang computer. Haven't been around for a couple of days and realized I was still active.

Have been working feverishly to get my new place ready to move into. Luckily, my beloved former hairdresser (Mrs. Karen) spent the entire week helping me finish the damn painting and all the little things. She's my former hairdresser as I no longer anything more than complete buzzes that I can do myself with my dog trimmers.

For 6 months now, every time I entered the damn master suite, I became overwhelmed at the amount of work to be done. A complete tear out to the joists with having to redo the work that I paid a "contractor" to do. Another "you get what you pay for" lesson.

I think I'm still on schedule to be completely in before the end of the month so I can throw a birthday party for myself. The last one in my 40's. Not too bad considering what I was told on the day I tested positive; "I could possibly live to be 30 if everything goes well". That statement has stuck in my brain like a nagging hourglass, slowly waiting for the sands of time to run out.

Thankfully, advancements in research has allowed my hourglass to be refilled many times.

Mrs. Karen gave me the strangest look when I indicated that I'd repaint the place after I got settled. Being color blind, you'd think I wouldn't be able to tell the color of the place. Well, I can't and the gray on gray walls look too blue on blue.

I think I'm still on schedule to be completely in before the end of the month so I can throw a birthday party for myself.

Good luck with that That is very exciting ! Hope it's a great party !!!! I'm heading into a new decade in August , starts with a 6 Speaking of color !!!!! My niece had as stroke when I suggested painting the inside of the kitchen french door " Cantaloupe " It looks lovely

I've finally got Kitchen cupboards up @ThebeachHouse Only the uppers . The new solid Oak floors go in on the 18th ! We are working feverishly on getting all painting done ; then we need to place all the appliances on the deck , the flooring guy says one day to do the whole house . It's little . I will get a break from traveling 90 miles a day to work , but will be painting all the cabinet doors . The floors need three days to cure , when we are ALL done they will come back and put a final coat of glopp on the floors . Have to order the counter tops this week , I REALLY doubt that installing them will be my project I am so tired and achy , the thought of driving back to Missouri sounds dreadful

A complete tear out to the joists with having to redo the work that I paid a "contractor" to do. Another "you get what you pay for" lesson.

ah! no wonder you wanted me to come up and "visit". After the front-wall-to-back-wall remediation/remodel we did here, I have the skills. Although when I didn't have the skills, I did have the most awesome contractor - my baby brother! We still have the two bathrooms to finish up at some point; but I'll be able to do most of the work in those rooms - except for the showers.

sigh! My mom and I have had some serious arguments during the last of this remodeling, which are basically me "explaining" that white, cream and beige are NOT colors. Cantaloupe (which are very yummy) sounds beautiful!

in other news, I'm still UD but my tcells fell below 300. sigh!It's going to be hotter than blue blazes this week, so I'll be over at the water park in Carowinds a lot!

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Oh no Carl, I painted all the 6 panel doors a bright high gloss white along with all the trim. I would NEVER put color on such things. Hopefully you'll get the project done soon. I know how much you've been dealing with. Isn't cantaloupe like yellow? I've had to try and stay neutral in case I decide to sell this place in the future.

@ Mikey, I still have the 3rd bedroom to finish. After you get your remodeling done, your visit will be greatly appreciated and we can knock out my last room in no time and then enjoy a great visit.

I purposely decided to misbehave last night. I drank things I've never heard of before and smoked some much needed medication. I was so far out there and it felt great to numb myself beyond all cognition. Still trying to piece things together ie...why did I undress on the deck? Did I pretend I was young and decide to streak like it was the 70's? Did I have company who brought all these Coors lite beer cans? I guess it sometimes is better to not remember all the details....lol

Still trying to piece things together ie...why did I undress on the deck? Did I pretend I was young and decide to streak like it was the 70's? Did I have company who brought all these Coors lite beer cans? I guess it sometimes is better to not remember all the details....lol

ON Friday night I broke/cracked my left rib on bathroom tub ledge must off past out after getting up from Lav, off my face thankfully at the moment, can walk with two sticks but opiates do not aid my posting . Feels better than yesterday but I am still crying out coz it hurts so .dam it .

Quite Michael on FORUMS while he is so medicated

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

ON Friday night I broke/cracked my left rib on bathroom tub ledge must off past out after getting up from Lav, off my face thankfully at the moment, can walk with two sticks but opiates do not aid my posting . Feels better than yesterday but I am still crying out coz it hurts so .dam it .

Damn Michael, that is dreadful. They can't even do anything for broken ribs and it takes so damn long to heal. And definitely remember, even when the pain subsides and you think you're healed, you still have to be cautious for about 2 months. I was a month into recovery with a broken rib when I reinjured it had to start the healing all over again.